(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

Need clarification on dosages of Vitamin D3. I started taking it many years ago (on my own) and don't ever recall having my levels low and can't remember why I started taking it. I had not been diagnosed with MAC/NTM at the time. That DX came about earlier this year. Anyway I take capsule form 5000 IU (125mcg). I noticed a lot of talk of taking in mg amounts. Is that a prescription D3 and are there options to get it injected??? Just want to get it straight. Thanks to the group. So much good information.

REPLY
@fdixon63

Need clarification on dosages of Vitamin D3. I started taking it many years ago (on my own) and don't ever recall having my levels low and can't remember why I started taking it. I had not been diagnosed with MAC/NTM at the time. That DX came about earlier this year. Anyway I take capsule form 5000 IU (125mcg). I noticed a lot of talk of taking in mg amounts. Is that a prescription D3 and are there options to get it injected??? Just want to get it straight. Thanks to the group. So much good information.

Jump to this post

@fdixon63, Here are some sites to read about supplementing with Vit D. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-how-much-vitamin-d-do-i-need/ and https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-d-deficiency/faq-20058397 You can find many more articles on the Mayo site by Googling Vitamin D Mayo Clinic. There are many more. I do not use any supplements because I just cannot stay on schedule with them. I try to get as many of my vitamins from my food. I do know that it is suggested that you take a combination supplement of both Calcium and Vitamin D. Your body cannot absorb the D without the calcium.

Liked by lorifilipek

REPLY
@fdixon63

Need clarification on dosages of Vitamin D3. I started taking it many years ago (on my own) and don't ever recall having my levels low and can't remember why I started taking it. I had not been diagnosed with MAC/NTM at the time. That DX came about earlier this year. Anyway I take capsule form 5000 IU (125mcg). I noticed a lot of talk of taking in mg amounts. Is that a prescription D3 and are there options to get it injected??? Just want to get it straight. Thanks to the group. So much good information.

Jump to this post

@fdixon63
Hi I may have wrote in error that I take 5000 mg D 3 sorry that should be 5000 IU D 3.
I do get my levels checked often when I see my primary and that amount brings my levels up to a normal. I do believe that vitamin D is very important to the immune function. If you live in a sunny climate you may not have a problem but it's easy to get checked to make sure your not deficient.
I do know people that are put on prescription D 3 Supplemention here in Minnesota where we don't get out in the sunshine a good share of the year.
Shari

REPLY
@windwalker

@fdixon63, Here are some sites to read about supplementing with Vit D. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-how-much-vitamin-d-do-i-need/ and https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-d-deficiency/faq-20058397 You can find many more articles on the Mayo site by Googling Vitamin D Mayo Clinic. There are many more. I do not use any supplements because I just cannot stay on schedule with them. I try to get as many of my vitamins from my food. I do know that it is suggested that you take a combination supplement of both Calcium and Vitamin D. Your body cannot absorb the D without the calcium.

Jump to this post

Excellent Terri!

REPLY
@boomerexpert

@anniepie thanks for the info,,,so,,,you take it in pill form?

Jump to this post

@boomerexpert I don't know, sorry — I haven't tried it yet. But it's worth looking into it.

REPLY

Hi, Everyone, I haven't been active in a while but follow all the emails. I thought I would check with my MAC community to see what compressors you use if you do nebulized solutions. I have had the Pari Vios and the Pari Trek for travel for a few years. I'm on my 3rd Vios compressor as they tend to lose force. My treatments are much longer than the typical 10 mins per med. Their customer service has been great in exchanging at no cost to me but my last one only worked at peak performance for a few months and I'm tired of dealing with it. Anyone else have good luck with other brands? Would love a quieter one as well! Linda M

REPLY

@lindham272…Hi Linda, I use Phillips respironics for 45 and 30 minutes a day. Medicare pays for one every 5 years, but I bought my own after it broke at 4 years.

REPLY

@lindam272 Hi, I use the Pari Eflow (2.5 years) and it is fantastic, silent, quick (10 mins for my saline) , compact and easy to use or take away. You do have to buy a replacement part 6mthly-yearly to keep it up to speed which is expected for these. I would really recommend one of these. Just make sure you clean it really well. This was part of my kit when I was in the Amakacin trials and they said it was the best on the market.

Liked by Brenda R., anniepie

REPLY
@lindam272

Hi, Everyone, I haven't been active in a while but follow all the emails. I thought I would check with my MAC community to see what compressors you use if you do nebulized solutions. I have had the Pari Vios and the Pari Trek for travel for a few years. I'm on my 3rd Vios compressor as they tend to lose force. My treatments are much longer than the typical 10 mins per med. Their customer service has been great in exchanging at no cost to me but my last one only worked at peak performance for a few months and I'm tired of dealing with it. Anyone else have good luck with other brands? Would love a quieter one as well! Linda M

Jump to this post

I had the same problem with the pari vios. When my 3d one failed after only a few months, I went online and bought a Phillips resperonics. I was so upset and although the Pari people were nice, I just wanted a compressor that works. I've had it for several years and it works fine. I know I am eligible for another one through Medicare but this one is working fine

REPLY
@heathert

@lindam272 Hi, I use the Pari Eflow (2.5 years) and it is fantastic, silent, quick (10 mins for my saline) , compact and easy to use or take away. You do have to buy a replacement part 6mthly-yearly to keep it up to speed which is expected for these. I would really recommend one of these. Just make sure you clean it really well. This was part of my kit when I was in the Amakacin trials and they said it was the best on the market.

Jump to this post

I googled the eflow and it looks like the Arikayce nebulizer. It is REALLY expensive. Did your insurance cover it?

REPLY
@rits

I had the same problem with the pari vios. When my 3d one failed after only a few months, I went online and bought a Phillips resperonics. I was so upset and although the Pari people were nice, I just wanted a compressor that works. I've had it for several years and it works fine. I know I am eligible for another one through Medicare but this one is working fine

Jump to this post

@rits Hi – which model did you get? I find several on line. Am looking for one – ready to replace my big Vios with one that is more portable. I have a Devilbiss Innovator for travel, based on ratings I found. It takes "forever" to neb – started out great at about 10 min, now up to 20-25 min per vial – the vendor told me it's different on battery or plugged in, but it's not. Filter, tubing and mouthpiece are changed out for new, but no improvement.

REPLY

Wow. So many machines. I bought mine 6 or 7 years ago and I don"t see anything like it. The ones on the website look much smaller and nicer and I'll bet they're quieter and faster. On another site, people are recommending a ombra. They say that it's fast.

REPLY
@rits

I googled the eflow and it looks like the Arikayce nebulizer. It is REALLY expensive. Did your insurance cover it?

Jump to this post

@rits No I thought it was worth purchasing, despite the cost, it saves me time, easy to clean, does a great job, has no tubing which can harbor germs and is so compact I do not need a travel unit also, can plug in or run off internal battery, a really great machine, I am all for easy at this stage of my life. Insurance may pay for it.

Liked by anniepie

REPLY
@heathert

@rits No I thought it was worth purchasing, despite the cost, it saves me time, easy to clean, does a great job, has no tubing which can harbor germs and is so compact I do not need a travel unit also, can plug in or run off internal battery, a really great machine, I am all for easy at this stage of my life. Insurance may pay for it.

Jump to this post

Hi Heather @heathert Did you order your Pari Eflow from the USA?
Hope you're good — you've finished the meds, right?
Hugs from Annie

REPLY
@heathert

@rits No I thought it was worth purchasing, despite the cost, it saves me time, easy to clean, does a great job, has no tubing which can harbor germs and is so compact I do not need a travel unit also, can plug in or run off internal battery, a really great machine, I am all for easy at this stage of my life. Insurance may pay for it.

Jump to this post

@heathert Hi Heather, I don't find a Pari online that has no tubing, can you give me an exact model #? It sounds like what I am looking for because we travel a lot and I need a tiny machine that can be adequately cleaned while on the road.

Liked by anniepie

REPLY
Please login or register to post a reply.